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Author
Topic: 20 Years Pos & Still Here!! (Read 7528 times)

Hi Everyone,I found out in 1988 that I was pos, it was devastating. I was also told at that time that I had 6 months to a year to live by the TOP AIDS Dr in the country. But look, here I am. I went on meds several years later after stubborn discussions with my docs. I had previosly decided that I would never take the drugs, but I did and I am. I take very good care of myself, take my meds like clockwork and sometimes worry about borrowed time or future consequences of the drugs and disease. But my CD4 is 1300 and VL undetectable, I drink a ton of water, eat my veggies, and get plenty of excersize. I have that wonderful Lipo belly and a few well meaning folks have asked when Im due! How do you answer that one?!! My biggest strategy has been not to stare at the plate. You know... People say they have a lot on thier plate, well I kno I have a lot on my plate, but i just dont stare at it! Having a great sense of humor has also been nessesary I was sick this week in the hospital for 2 days with wierd internal bleeding and that was scary because I live alone and have no family within 2000 miles. But I am strong, and hope to be strong as long as possible. It is really good to see other long term survivors, and to see what may lay on the road ahead. Bless you all and stay strong!!Hugs Stella

Wow Stella, so nice to read your post, you have made my night. I am so so so so so glad you are ok and that everything is working fine for you, you give me inspiration and help me out to be more optimistic in my approach, thanks a lot.

I am a year diagnosed... well a year and 29 days but i hope i can also count the 20 years and keep on having such a great humour sense of you. Congratulations!!!

I was also diagnosed in 1988 (September), and given the same prognosis by my doctor – that I had six months to live at the most. Well here we are, even tho doctors have been trying to kill me with their helpful ways ever since.

Kudos to you for having such a great outlook. It is very important for everyone, not just those of us with HIV over 20 yrs. I've been positive, as well as I can estimate, since October of 1984. I know this only because several years after that, I found out that one of my relationships (I was about 19 at the time) had died....I had already known I had become positive, but could narrow it down to that one person.

After living with the black cloud on my head for 10 years, and basically thriving on a 'devil may care' attitude...moving from NJ to LA for 8 yrs, then back to NJ in 98, in and out of colleges...but always feeling like it was my last year on earth...now I am in RI...that's Rhode Island. I've fired doctor and nurse alike...and I mean F I R E D. You know, told them where to go. Because for the first 14 yrs...up until 1998, I took no meds. I refused. Working at the wonderful Bristol-Myers Squibb through all the times when gay men were out on the streets screaming for faster FDA approvals for those dying NOW, I learned that these pharma companies have their bottom line first...I happened to work for the PhD overseeing the very first Phase I (was it DDI?) DDI trials in Japan....which by the way killed 7% of all patients of acute pancreatitis....with or without HIV. SO I WAS SCARED OF THESE DRUGS...and I saw the execs there manipulate the public sentiment for their financial advantage...and THERE AND THEN decided never to take DDI at least. Well that was then...

In 94 in LA, I found out my TCells were in the hooter at about 216...and worked for AIDS Project LA at that point. So, after the earthquake and this, I went a little nutty. Ha ha ha. I saw the statistics for survival every day at APLA...and still the docs were telling me my future was grim..and I was poor as could be working for this charity. 98 I got PCP, 99 Crypto and a hernia, 03 acute appendicitis, 04 had to have my shoulder replaced thanks to the steroids mixed with antivirals while having cryptococcoal meningitis....OK OK..you see it's been no picnic...but here I stand. Still Strong in Mind, Strong in Spirit and a bit less strong in body. The 'lipo' belly/neck thing has happened, the shoulder replacement isn't the best, and now of all things I can't seem to lose weight. My DOC (who in Providence is the greatest I've ever had) tells me I'm now resistent to almost everything....but I STILL refuse to believe it (and he respects this)...my tests all came back several times now saying I am resistent to all the drugs in ATRIPLA...and I tell him, well, I take it everyday without question because it's easy to do once a day. And here, my health is better now than it's been for quite some time. The load isn't quite undetectable, but closer to it than on any of the other meds, and my TCells are almost 300 which is FAR better than pretty much anytime in the past 10 yrs...maybe 15.

YOU SEE, the strength in spirit, being willing to make drastic changes in your life when the chips are down to take care of your own health, the ability to stay on top of any medical development this world offers us...it's all very important. I've now been with the same HIV pos partner for 8 yrs. We run a business together, at home, and pretty much answer to no one. Just remember, any bad thing could end up a good thing in the long run. EVERYONE had bad things happen to them. I can't tell you one of the bad things that I've endured yet that had not ended up being a most amazing, great and wonderful thing. So keep your spirit strong, your body healthy as you can, and your mind focused on the life you want to enjoy. STONG MIND, STRONG BODY, STRONG SPIRIT!!!

Hi Everyone,I found out in 1988 that I was pos, it was devastating. I was also told at that time that I had 6 months to a year to live by the TOP AIDS Dr in the country. But look, here I am. I went on meds several years later after stubborn discussions with my docs. I had previosly decided that I would never take the drugs, but I did and I am.

Hey Stella, Im glad you are here as well. I was diagnosed same year with same diagnosis regarding life span. We must have done something to get this far? Like your concerns I remain optimistic about my future in regards to unforseen health problems from long term pill use . We all went through so many periods of "not knowing". I guess being in this state is like a second skin yet it still does linger way in the back of our minds

I'm on Atripla. It's working...but my tests come back saying I am resistant. Some of the docs in the practice I visit suspected this to happen, that the resistance tests were not entirely accurate...OR....that sometimes, certain drugs still worked in combo regardless of the resistance patterns. So I took the chance, and I must say, I'm happy with the results even though my doc is a little dumfounded by this. I have very little left as choices that aren't resistant and prefer to completely exhaust a drugs ability to work ... especially if that drug has little or no side effects. I found that Atripla is that for now. Go figure?

I am also 22 years on and received the same life/death diagnosis as you, also from a well regarded doctor. But, here we are! I still see the same doctor to this day. But let me tell you, I've taught him a thing or two!

Just keep on with your groove! Wishing you many, many healthy and happy years ahead!

Logged

"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

I have that wonderful Lipo belly and a few well meaning folks have asked when Im due! How do you answer that one?!!

With the belly sometimes I tell them its due any day now, or make up a date if I dont feel like messing with them. If I'm feeling spunky I might look at them like they are loony and say I'm not pregnant I'm just fat. LOL

I was diagnoses with hiv in 1985 which is 23 years already. My CD4 are above 750 and my CV has been undetectable, thanks to God. I live in Monterrey Mexico and I would like to meet other people from the same city that are also positive.